Hi Everyone,
I had a radiation & excision of a myxoid liposarcoma tumour last year. I was NED for 10 months until I had back problems which turned out to be a recurrence & bone mets. As it turns out it was 'just hiding'. So I'm looking at my options for palliative chemo or immunotherapy.
My oncologist has ordered gene testing to establish the PD1 possibilities. My first oncologist wanted dox/ifos so I went for a second opinion. Dox/olara was approved in the UK June of this year but isn't yet in Ireland where I am. There are options but they mainly seem to be approved as second line treatment after anthracycline.
A lot depends on the outcome of the gene testing but I'm considering self funding olaratumab (dox is covered by insurance) as a first line. I'm 35, no underlying conditions & no mets anywhere other than my lumbar, so I'm as able as I'm ever going to be for a hard chemo regimen.
Playing the long game here, I'm considering this as my first step so I don't have any more problems than necessary with approval for second line treatments which have been mentioned like trabectedin, pembrolizumab & various others. Most seem to require previous anthracyclines & I don't want to have to battle for each new drug when the time comes. Time & relative health are on my side now so I don't want to paint myself into a corner.
Hypothetically where would you start? Dox/olara & then move onto the less debilitating & perhaps more promising lines of treatment? Or go straight to the PD1 route?
My onc is all about immunotherapy which is great but I have to think about funding & approvals & using my current health to my advantage in the long run.
Any suggestions or advice?
Thank you
Clare.
Hi Clare,
We’re so sorry the mets appeared so soon after your first-line treatment.
If you’ve read our book, you’ll see how we went through surgery, radiation and chemo (dox/ifos), only to find out that even after all that, the chance of recurrence was still high for me. This meant the treatments I went through were not effective in getting rid of all the cancer cells (in 5 years, 50% of patients will have recurrrence/ mets).
It depends how effective the second-line treatments for your cancer are. Press the oncologists for numbers so you have a good idea what the treatment will give you, and what side effects to be prepared for.
Personally, if we were dealing with a recurrence/mets after first-line treatment now, especially knowing what we know now, we would go for immunotherapy to aim for a cure, instead of treatments that may slow down tumor growth for a short period of time. This has been our philosophy all along. For our detailed thoughts on making treatment decisions, we recommend reading Chapter 16 "Seizing the cure", from section “Like Mary or Like Harry?” to the end of the chapter (pg 273-284).
If you are considering PD1, maximize the effect of PD1 by doing some treatment beforehand to generate T cells against your tumor (see Chapter 16, “A Tail of Survival” and Table 3, pg 268-272), such as cryoablation (our first choice) or radiation.
We would suggest looking into cryoablation, which is able to kill tumors in the bone and it also numbs the nerves in the bone, decreasing bone pain. We explain in Chapter 11 how cryoablation can generate T cells against the tumor.
The cryoablation doctors we have full confidence in are in the US (Dr. Littrup + Dr. Aoun, both in Michigan, USA). One caregiver on this forum has suggested these doctors in Germany + London (Read post “Cryo in Germany” in this thread: http://www.curingcancerbook.com/coleys-toxin-and-il-2) Do note that the success of cryoablation greatly depends on the experience of the doctor. We cannot vouch for any cryoablation doctors other than Dr. Littrup and Dr. Aoun.
Wishing you the best! Keep us posted on how you’re doing.
Rene and Eddy
As a followup to our first reply, please also ask your oncologist if they are testing your tumor for NY-ESO-1, which is a common tumor antigen found in myxoid liposarcoma (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5039267/). NY-ESO-1 is a cancer antigen that immunotherapy treatments can use to target the cancer. There may be immunotherapy clinical trials specifically for NY-ESO-1 expressing sarcomas.
Thanks so much for your reply. I am reading your book, I hadn't considered cryo so thanks for the tip.
My onc is testing for NY-ESO-1. I should find out on the 17th what the results are & what my options will be. I'll ask about cryo, I've at something like 60 gy for radiation so it might be my only option for this back pain.
Your book confirmed what I thought about Dox/ifos. Also in regard to the genetics, it makes a lot of sense, 2 uncles died of Leukemia & on the other side my mum had melanoma so it makes a kind of sense that I would get a cancer which has commonalities.
Thanks again for your help.
We hope our book will be helpful for you in making your treatment decisions. We recommend reading our book in sequence, as we gradually build up the information and science.
We're so sorry your two uncles passed from leukemia and your mom had melanoma. There is great hope now with immunotherapy. Take it one step at a time!